To My Kids: In Case of Dementia, Read This.

Hi kids. If you are reading this, it must mean that the dementia finally got me. That sucks. For me, certainly, but mostly for you because your minds, unlike mine, are presumably still functional enough to see what’s happening. I know how much it sucks because as you may recall, I’ve been in your shoes when my dad had the same disease. Which, obviously, is exactly why I’m writing this: we can call it an Advance Dementia Directive. It is not, as you might suspect, simply because I am bossy and rather particular in my tastes.  

Actually, it is that. But it’s also because I want you to have the guidance and advice that Pap Pap never got to give me.

So here you go. Please don’t treat these requests as optional. I do believe in life after life, so follow these recommendations or suffer the wrath of Ghost Mommy. I dare you!

Ghost Mommy may have lost a few pounds.

1.  Feel free to laugh at me, if I do or say something funny. THIS IS VERY IMPORTANT. It doesn’t matter if I meant to be funny, it doesn’t even matter if I understand why you’re laughing. I will not take it personally and my confusion will not linger. Laugh. It’s about the only good you will get out of this, so take it when you can. 

2.  Soft clothing. I don’t care if it looks like a tablecloth or set of curtains. For that matter I don’t care if it is a tablecloth or set of curtains. If it’s soft, I will wear it. Dress me in jeans and you’ll be checking under your bed every night for the rest of your lives, and trust me, haunted-mommy-under-the-bed will be way uglier than even early-morning-trying-to-finish-writing-something-but-you-two-won’t-quit-arguing-over-a-Playstation-game-mommy. 

3.  Nursing homes might try to tell you that I have nutritional needs. I do not. Their only goal is to keep from getting sued. Tell them I must eat what I like and if that means all of my meals include pureed cinnamon rolls, so be it. I’m not going to get any healthier. Let me have the goddamned sugar. 

Extra credit: push me uphill in a wheelchair while carrying a man bag.

4.  Very important: socks. I HATE WHEN MY SOCKS ARE BAGGY AND FALLING OFF MY FEET. Please, I am begging you, make sure my socks are tight, but not so tight that they cut off my circulation. You know what, I’m just going to buy my own socks. I’m going to start stockpiling them now, then I’ll attach them to this letter and you can tell all my grandchildren, “You know, this is just like Grandma! Always solving problems! Always living her best life!” And so on. 

5.  Come to see me. At the very least hologram yourselves into my room, as I’m sure that will be a thing by then. 

6.  While you’re there, make friends with the other residents. They’ll be happier for it and so will you. 

7.  On days you can’t make it, hologram a Tom Petty concert into my room and follow it up with Prince. I’ll make some playlists. I don’t want to hear any of the songs I don’t like. If I cry while listening to those songs, know that you have done well. 

My room at the nursing home.

8.  While I’m on the subject, hologrammed Golden Girls episodes would be super-fun; either that or perhaps there can be some kind of virtual reality (perhaps one of you can invent it!) where I’ll actually be in a Golden Girls episode. With cheesecake! It’s a dream come true.

9.  You can bring your kids to see me if you like, but it’s not required. HAHAHAHAHA! You’re thinking, WHAT??? Not required? Then how come WE had to go see YOUR DAD all the time? I’ll tell you why, it’s because you were good kids and you knew it was the right thing. If you’re raising little hellions that refuse to visit their grandmother, that’s your problem, not mine. 

10.  If I become mean or otherwise not myself, know that I love you. 

11.  When I seem distant and disengaged, know that I love you. 

12.  When I say things that don’t make sense, know that I love you.

13.  When I stare out the window instead of smiling at you, know that I love you.

14.  When I don’t know your names or who you are at all, know that I love you, KNOW THAT I LOVE YOU. 

15.  Lastly – if your father is the one to get dementia instead of me: well, it’s hard to imagine nice socks and Golden Girls holograms will keep him happy. Maybe send him into the woods with antlers strapped to his head. I don’t know.

Just kidding. Be nice to Daddy.

We both love you.

 

 

So That One Day, My Kids Can Make Fun Of Me

Fuck should be a regular word, I think. It’s not that bad. You know what I mean? It’s bitch that’s a real bad word. Or son of a bitch. If you called my brother Joe a son of a bitch, he’d beat the shit out of you. He didn’t like people talking about his mother.” 

This was my Uncle Al, with whom I was talking on the phone after a long period of no contact. I wrote about Uncle Al a while back in an essay called A Brother Thing, which was later published as part of the excellent anthology Here in the Middle. In that essay, I remarked that Uncle Al was easily as healthy as me. It’s been a couple of years, since then. Nothing stays the same. 

I’d called Uncle Al because he’d declined to have me come and visit him in person. He didn’t want any visitors, he said. He also wasn’t doing any visiting of his own, and so he and my dad hadn’t seen each other for many months. What a good idea, I thought, to call him from Dad’s room! 

Which really just goes to show you that my hope and optimism truly know no bounds. 

Uncle Al, Mom, Dad, Aunt Jeannie.

The dad in question was lounging in his bed, the back part up so he could take in a television show starring Andy Griffith and one of my favorites, Don Knotts. “Hold on,” I said to Uncle Al. “I’ll give him the phone.” 

See? Optimism again. I learned pretty quickly that my father is no longer familiar with the concept of “phone.” Let’s not even talk about the concept of “Samsung Galaxy S8 Plus.” 

“What is it?” he said to me, glancing at the phone and then handing it back politely. 

“It’s your brother,” I told him. “Albert. He’s on the phone… he wants to talk to you.” 

I held the phone up to his ear. He tried to take it from me. I held it firmly and pushed his hand away. I could hear Uncle Al on the other end of the line. “Ej!” he said. “It’s me, Albert . . . how you doing?” 

Dad said, “Yeah!” and then turned to look at the thing I had pressed to the side of his head. Uncle Al continued talking. Dad responded minimally and mostly in ways that didn’t make sense. At one point he reached out to touch my stomach, as if to see what it was made of. Cookies, I could have told him.  

Instead I backed away, leaning so I could still hold the phone to his ear. He kept trying to take it. Within approximately a minute and a half I knew we had to wrap it up. “It’s me again,” I told Uncle Al. “He’s not … uh … he’s not doing it right.” 

We continued talking for a while, because as we all know, life must go on even when it is too stupid for words. Uncle Al told me how if it gets too bad and none of his kids can bring themselves to do it, then he will pull his own plug. I said, “But if you need a plug to keep you alive, I don’t think you’ll be in any shape to get to it. You know. To pull it. On your own.” 

Wow! So helpful! And comforting, I mean, really. I should be allowed to communicate via writing only. No speaking permitted. But no one ever stops me. 

“I’ll find a way,” Uncle Al said. “I’ll show them.” 

I looked at my dad, who was back to his TV show but glancing my way anytime I laughed, which was fairly frequent. That’s Uncle Albert for you. I knew that if my dad had not got the goddamned Alzheimer’s, he’d be visiting his brother every day whether Albert liked it or not. Maybe they’d talk about the women they used to “chase,” or that time their brother Joe dangled their brother Ben out a third story window. Maybe they’d recollect the guys Joe beat up for calling him a son of a bitch. In any event, they’d laugh.They might be old and getting older, but they’d surely, most certainly, have a laugh. 

I’ve said it before and I’ll say it again: I really, really hope my own kids are the best of friends when they’re in their eighties. At least close acquaintances. Siblings, having shared so much of life, have the ability to reminisce in a way very few other relationships get to enjoy. Many siblings don’t take advantage of this. I say, if you can, you totally should. 

I need Alzheimer’s to be gone within the next half century or so, because I want my kids to be able to do this. I hope they look back on “that time Mom crashed into the guard rail” and “that time Mom crashed into the other guard rail, or wait, maybe that was a telephone pole.” I want them to chuckle over how upset their dad used to get over mere cosmetic damages. I hope they will laugh about every fight they ever had, and wonder how their mother ever managed to remain so goddamned cheerful. Speaking of curse words, I want them to use them correctly when they reminisce, as in, “Daddy was grumpy as shit, wasn’t he?” 

I want them to remember, is I guess what I am trying to say. 

My family is participating in the Pittsburgh Walk to End Alzheimer’s this November. We have fifty years to get it done with. If you’d like to make a contribution – or to join our team – you can do so here. 

 

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